Jump to content
Sclero Forums


  • Content count

  • Joined

  • Last visited

Posts posted by Susannah

  1. Hi sadie and barefut


    Yes, I definately have changes to my face, hands, arms and inner thigh. I have days where my confidence is shot regarding my face, like today, I postponed my hair appointment becos I just couldn't face looking in the mirror that long and I get alot more people staring now which is hard to bear sometimes. At the supermarket the other day, the checkout girl kept staring at me (mind you she was a very sour girl) and I could feel it :( , my daughter noticed it and stared back at her until she became embarrassed and stopped (it made me proud of my girl for that :rolleyes: ). Im sure Im not that henous - hehe :lol: , but it is surely showing me the level of my vanity, which isnt a bad thing. I am consious of my arms as well and always wear long sleeves even in summer, but also thats not a bad thing as the sun is so harsh here in NZ and burns immediately. Im glad you asked sadie, its good to talk about these things that can usually be hard to deal with :)

    Susannah x

  2. That does sounds yummy...............


    When you say pudding though, is that like a packet mixture that you just add milk and mix with an electric beater then set it in the fridge?


    Here in NZ, we actually call everything 'pudding'. We didn't grow up using the word 'dessert' until things got really mod and everything became 'gourmet', that would be about the 1990's.


    Hey, what about chocolate mousse on top of a cake mmmmmmmmmmmmmmmm hehe


    Have fun

    Susannah x

  3. Thanks Mary

    You are right indeed and thanks for the encouragement. I dont always feel that confident to confront these things, but I know me, one day it will just hit and the right words and reaction will just come out ;) .

    Sadie...its so awesome that you are asking these questions, we would never know these things about each other, otherwise. And the purpose of this forum is for support and to not feel so alone, it is definately working! Thank you :)

    Take care all

    Susannah x

  4. Ive had a disabled carpart permit or placard as you call it for over a year now, my sisters organised it for me otherwise I may not have got it so soon. I love it, as I definately get tired so fast while im on town. Im finding though, the dirty looks I get from people who can't see my permit at first but only see a young looking woman getting out of the car and sometimes I walk past them and they have muttered loud enough for me to hear. One time I was gutted and walked into a quiet isle of the supermarket and nearly cried, i was shocked. I guess If Im not elderly or half crippled they find it hard to believe I need it. Anyway.....Ive had my rant lol. Im not ready for a cane or wheelchair/walker yet, as Im still quite sturdy on my feet thankfully so far. But am always afraid that I will drop something in town like my keys or my shopping etc as I can't bend down to get it, i would have to ask somewone walking past to help me, now, that I would be embarrassed about, or I would have to hold something to get down on my hands and knees which is really hard and painful to do and getting up again is sooo hard. Quiet the challenge isnt it??

    Susannah x

  5. Lisa and Omaena

    Please can you have a look on your maps to see if Im there. Im the only one in New Zealand on the map, at least I was when I done it.

    Thanks, I dont know what Im doing wrong, but I can't seem to get that 'add yourself' icon back.

    Susannah x

  6. I looked up the meaning of golden syrup on Wikipedia...............


    Golden syrup is a thick, amber-colored form of inverted sugar syrup, made in the process of refining sugar cane juice into sugar, or by treatment of a sugar solution with acid. It is used in a variety of baking recipes and desserts. It has an appearance similar to honey, and is often used as a substitute for people who cannot eat honey and those who choose not to (such as vegans). It can also be used as a substitute for corn syrup. Treacle has a richer colour than golden syrup, and a stronger, slightly bitter flavour.


    This describes it perfectly. It has a strong caramel taste. We love it on toast and crumpets.

    Susannah x

  7. Hi ya


    Yes, I wondered when I was writing this recipe if anyone over there would know what golden syrup is. And Ive always wondered what corn syrup is hehe. thx jefa for answering that one ;)

    Happy Baking

    Susannah x

  8. Hi dre


    I got a sore throat about 3 weeks ago and it progressed down my chest abit and up to my nose, Im still coughing up phlegm and sneezing and I can be chilly when Im sitting, but as soon as I get up a walk or do a samll job around the house I get really hot and have to go sit down. The first year I got this disease I remember being mildly flu'y for months. Then I got my diagnosis. I havnt done anything about this lot and are just watching it. I do get concerned about it becoming something like pneumonia. I have generally noticed that colds and flus definately hang on alot longer since Ive been ill. Im probably no help, but in my experience, it goes with the territory. I wonder what others have to say!

    Susannah x

  9. Hi Lisa


    I love this map and joined the other day. Unfortunately how I done it was random and when I bought the map up again, my marker was gone and Ive have no idea how to start again to add my marker. So, once Ive click on the icon on the top right and the map is there in front of me, what do I do to get on it? Its probably simple hehe, im not the cleverest computer girl around!!

    Susannah x

  10. Welcome Steve, nice to have you here.

    Its truly a wonderful thing for you men to be seeking help for your loved ones. It means so much to me when my husband is pro-active for me and is understanding and helpful and is always there at all my hospital visits and appointments. I know it will mean so much to your wife also!

    Ive no better advice to give than what the other lovely ladies have given, so take care and we look forward to hearing how you got on.

    Susannah x

  11. I thought it was time to add a new recipe. Pavlovas are a New Zealand classic dessert and especially loved during the holiday season while the weather is hot and enjoyed after a good old kiwi BBQ. This recipe is just like the one I grew up with and its from the 'Family Circle step-by-step' book.




    5 egg whites

    1 cup sugar

    2 tsp white vinegar

    2 tsp cornflour

    small pinch baking powder

    1 1/4 cups cream

    berries and fruits to decorate


    1/ Preheat oven to 150 degrees centigrade and brush a 20 cm round sprinfrom tin with melted butter or oil. Line the base and side with non stick baking paper, extending 3cm above the rim. Grease the paper and dust the base and side with cornflour, shaking off any excess.

    2/ Beat the egg whites in a large dry bowl with electric beaters until soft peaks form. Add the sugar gradually, beating well after each addition until thick and glossy and the sugar has dissolved. Beat in the vinegar, cornflour and baking powder. Spoon into the tin and smooth the surface. Bake for 50 - 55 mins, or until well risen and lightly browned on the surface. Turn the oven off but leave the meringue inside until completely cool.

    3/ Whip the cream until soft peaks form and spread over the pavlova. Arrange fruit decoratively on top and serve immediately.


    Hope you enjoy

    Susannah x

  12. Oh wow Sweet, she is sooooooooo adorable, you got me looking up Pomeranians on the internet tonight. The place I looked had a 'match me' test to seewhat dog would suit my personality and lifestyle and tea-cup Pomeranians showed up as a perfect match - cool, when I have a spare $4000 I'll get one LOL. Weve never had a dog as adults, only cats and birds. I got my first cat (Cilla) when I went flatting at 17 years and she survived until she was 18 (wow). Now we have a long haired tabby girl cat called Porsha whom we inherited and amazingly is an exact twin in looks to my old Cilla, it took me a while to remember Porsha isnt Cilla. Plus we have 2 budgies male and female called Zacharia and Elizabeth. The kids are trying to teach them to talk without success and we want to be able to let them out of the cage in the evening, we leave the cage doors open but they dont want to come out (funny things).

    Thanks for sharing your little baby Sweet

    Susannah x

  13. Im late coming on board with this one. Im loving all these cool places to get to know you all. My real name is Sue. I wanted it as my screen name, but it came back as already being used. One of my sisters, Rose, calls me Susannah when I call her Rosemary, its just one of those silly sister things and I like it, so thought it was a nice name to use and everytime I use it, it reminds me of my dear sis who is far away from me at the moment.

    Susannah x

  14. Im a bit late coming on here. But Im really, really glad you went and got it checked out and Im hoping too that nothing comes up that will get in the way of your transplant. Im looking forward to it with ya babe. Not long to go now a!

    So rest up large

    Susannah x

  15. I have definately thought of you ever since I read your post. Thank you for sharing this with us so we can share your grief as well. My husband is in the police force and was on the frontline for 3/4 of that time. Now he has a position that keeps him away from danger which settles me alot. Both my son and daughter are now talking about joining up when they leave school and my son esp is wanting to be on the Armed Defenders Squad and has mentioned peace keeping over seas. I get so frightened about it and tell them its not as glamourous as they may think and at the end of the day, I know I can't stop them, as much as I would like to, if thats what they really want to do. I just want to say, how incredibly brave and courageous anyone is who puts themselves in a position that puts other people before themselves, it blows my mind because I really dont think I could do it. I remember having dreams (while my husband was at police college) and finding that I had become a police woman and so upset and frightened because its not what I wanted to do, I had hand trouble even then and in the dream I had no strength at all in my hands to apprehend this guy, it was horrible and glad to wake and find it wasn't real phew!!! There are things so beyond our control, it would be nice to be able to let go and live like 'what ever will be, will be' and to rest in that. Ive along way to go. But Ive tasted it and know its possible and I hope for that for you too. I also know that my worrying and anxiety all these years have not changed a thing.

    Well, I surely have rambled havnt I.

    Hugs Hugs and more Hugs

    Susannah x

  16. Hi Rosa, nan and Shelly

    Rosa, Im so glad yours has settled now. You must have alot more energy now.

    Thank you all for your posts. I feel well after last weeks treatment with another one in 6 weeks time. I will talk to my rheumatologist in April and see what else he has to say on the matter. I also get my heart and lung tests done at the same appointment, so heres hoping all is still well on the inside, the longer the better :rolleyes:

    Im so glad to have this forum.

    susannah x

  17. Hi Karen

    Oh my...you have done soooo well!

    I know how it feels with so many things suddenly happening all at once, being poked and prodded, tested and analised. It makes you feel so vulnerable and frightened. I remember crying for days about the unknowness of it all.

    Please, Please let yourself off about the way you are feeling, it is so normal and know that better days ARE ahead. Half the battle is acceptance of what is happening to us and learning to go with the flow.

    Im glad the PICC line worked well for you, I done a bit of asking around the hospital here when I went for a blood test and found it to be a common practice here in NZ too. Its so nice to learn something new. I know you will love your Port too, once the swelling settles as Im so relieved to have mine. I find not many doctors have come across them or it has been years and years since they ever accessed one, I feel quite clever telling them what to do.

    Ports can stay in for years and the one I have has to be flushed once a month. I usually need a blood test every 2 weeks anyway, so that deals with that. It feels a little strange there under the skin for a while until you get used to it.

    All the best Karen, by the time you get this, I'd say you have already had your operation.

    Id love to hear how it got on!

    Lots of Hugs

    Susannah x

  18. Hello Everyone

    Im just wondering if there is anyone out there who has had to deal with this symptom?

    I had my 7th laser treatment in Wellington last Thursday. It went smoothly and without too much discomfort, and thankfully this time I wasn't ill afterward except for minor stomach cramps. Last time I threw up for 3 days and the cramps went on for about a week. The 6th treatment gave me 4 months break from weekly blood transfusions. We were so pleased and hopeful that this meant it was cured. Unfortunately, the new year saw a return of those familiar symptoms of nauseousness, loss of appetite, pounding heartbeat, breathlessness and with no energy to do anything at all. I had to have another transfusion and another appoinment for laser treatment.

    Has anyone had a similar experience with this condition and does the bleeding eventually stop?

    Id love to hear from you!

    Susannah x